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Daily Journal with Mitochondrial Myopathy

Day by Day with a Movement Disorder

My Journey with a Mitochondrial Disease - "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31 KJV

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Diagnosis in 2006 - Parkinson's Disease and Peripheral Neuropathy, then in 2007 - Essential Myoclonus. Finally in 2011, after a muscle biopsy, I was diagnosed with Mitochondrial Myopathy as well as Peripheral Neuropathy.

Share my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!

Tag Archives: Bowel Retraining

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Getting Better I Hope!

Day by Day with a Movement Disorder Posted on December 15, 2008 by DBMay 24, 2016 4

I’ve been faithful with the Prune Juice/Miralax cocktail every afternoon and the constipation is getting better, thank goodness. I’ve noticed just a little bit of hand jerking when I mean to single click on the computer, but not as much as I was doing it on the Neurontin. One thing I am doing differently this time is to continue to use the suppositories, even if my digestive tract is behaving itself. At least for now I am pleased with my progress with those problems.

We continue to be busy with our toy sales, and I stay busy every day trying to keep up with the Lost Toys Search Service. Ever since I changed the routine to give me more time on the requests and less on the searches themselves I have managed to stay caught up most days. That’s quite a contrast to the 60 or so requests I was behind on before I decided I had to make a change.

The Search Service is a way to help people in an unselfish way, and that positive energy helps me through most days in a good frame of mind.

The house is bit by tiny bit getting straightened back up, with a bunch more stuff going out to the garage for our next sale. We may not have pretty weather again until Spring, but with Alabama weather you just never know what you’ll get on any given day.

I never have been into Feng Shui, or however it is spelled, but I can testify that it’s easier to get work done in an uncluttered environment. So I keep chipping away at the clutter and all those piles and stashes that have taken up residence with us. Each one conquered leaves me feeling that much better about myself.

I know that some people get more depressed as the Holidays approach, but thank goodness I thoroughly enjoy each ritual and family tradition. I can’t say I enjoy shopping, but we have such a small family that there’s not much of that to do anyway. Most of our time is spent finding all kinds of odds and ends to go in everyone’s stockings, big kids’ and children’s, too. And the wonderful music is the best of all.

I look forward to being with all our family at our grandchildren’s house this year, as always. Just thinking about it makes me smile.

Posted in Quality of Life | Tagged Bowel Retraining, Christmas, family, house cleaning, Lost Toys Search Service, Miralax | 4 Replies

Go-Litely AGAIN!!!

Day by Day with a Movement Disorder Posted on November 15, 2008 by DBMay 25, 2016  

I talked to the Gastro’s nurse again on Thursday, but his answer was not what I wanted to hear at all. I have to do the Go-Litely again! He seems to think that the large amount of gas I’m experiencing means I am still blocked. We had our Date Day as usual yesterday, but I am ready to start this mess all over again this morning.

I’m dreading it. If this doesn’t help this time I’m calling my Neurologist to see if there is any other Myoclonus medicine he could try me on. If not, it looks like I will be buying stock in some prune juice company! I’m already eating prunes almost every day, plus the complete Bowel Retraining routine as laid out by my Gastro.

As for Date Day, we enjoyed each other’s company, as usual, but the sales were basically duds. All this talk of hard times led us to think that we would see some “good stuff” being sold, but that was not the case yesterday. Oh well, we still bought enough to pay for our meals and maybe even our gas for the day. And it continues to be a lot of fun that we both look forward to.

I’m approaching 1,000 items listed in our online catalog of plush animals and dolls, so that is keeping me busy for sure. My goal had been to reach that milestone by the end of the year, but I think I may well exceed it.

My short bursts of energy to get housework done are getting longer, with less fatigue, so I must be improving my overall strength conditioning somewhat. I hope to continue to increase my activity level and get back to a regular exercise schedule. I’ve been doing my neck exercises faithfully now for some time, and it has helped. Now it’s time to add the Tai Chi back in on a daily basis. So much of this just takes will power, something I seem to be low on these days.

Speaking of will power … I’m having trouble saying no to sweets and chocolate in particular. And my weight shows it. Also, I’m keeping a nagging feeling of hunger – and I know that means the stomach ulcer is acting up again. For some reason I have always had a sensation of hunger when my stomach is hurting, rather than one of pain. There is a dull pain sensation when I press on my stomach.

All this digestive mess has turned into a bigger problem for me than I could ever imagined. I always thought you just took a laxative and that was the end of that problem, but it’s just not that simple when the medicine I am on is working against me in that respect.

It’s time to stop writing, as I am getting back into pity party mode here, and I don’t like that. I try to stay on a positive viewpoint, but anticipating this stuff today has me pretty low.

Oh well, this too shall pass. Sorry, couldn’t resist.

Posted in Medicines and Supplements | Tagged Bowel Retraining, elimination difficulties, exercise, Friday Date Day, Gastroenterologist, Go-Litely, Primidone, Quality of Life, stomach | Leave a reply

Beginning to See Slight Improvement as I Go SLOWLY with Triavil

Day by Day with a Movement Disorder Posted on September 18, 2008 by DBMay 25, 2016 2

I am beginning to notice some improvement in my elimination difficulties, so it looks like the Triavil is calming down the erratic muscle spasms in my digestive tract. I’m only on half the dose I should be on, but I’m still being obviously affected by the side effects, so I will continue to go very slowly.

Tomorrow is our Date Day, and we’re going to visit our younger daughter and her family this weekend, so it’s not a good time to try to add the next half of a pill. It can wait until next week, and I will just be careful to follow the Bowel Retraining regimen that my Gastro has me on. Everything is convenient that he has me doing except for the Milk of Magnesia every 3 days as needed. Well, there are times when I need it, but I can’t be home the next day to deal with the consequences!! LOL!!! But other than that, I have been very careful to follow all of his directions.

I am beginning to feel better generally, too. My ulcers must be healing, as I don’t feel that dull pressure pain like I was feeling. I will stay on the restricted diet and continue to eat something with every pill dose until I am sure the ulcerated stomach condition has gone. I don’t have the jaunty step back yet that I had right after I went on the Primidone, but I certainly am moving better than I was for awhile there when the ulcers and antibiotics had me knocked for a loop.

I’m staying busy all day finding lovies for people and selling a few, too. I’ve even felt good enough to start a little housework. I have the greatest hubby in the world, who does everything he can to help me, which means he does the majority of the work around here. So when I feel good enough I do try to help, plus there are a few things he just doesn’t “see” that don’t get done unless I do it, if you know what I mean. ROTFL!!!

Posted in Medicines and Supplements | Tagged Bowel Retraining, elimination difficulties, muscle spasms, Quality of Life, side effects, stomach, stress, Triavil | 2 Replies

Changing from Bentyl to Triavil for Digestive System

Day by Day with a Movement Disorder Posted on September 11, 2008 by DBNovember 20, 2016  

You may remember when my pharmacist caught what would have been a potentially fatal drug interaction some months ago, when I was still on Parkinson’s meds. At that time my Gastro was searching for some way to help my digestive system to work properly. He had prescribed Triavil, but ended up putting me on Bentyl instead. I have been taking it four times a day ever since. It worked well until I started on the Primidone, but I have had increasing and persistent digestive problems ever since.

He put me back on the strict Bowel Retraining program, limited my food choices even more, put me on the high powered PrevPak to heal the ulcerated stomach that the Endoscocpy found, and expected me to improve. I didn’t. Then he tried a week of some new med called Alinia, but still not any real improvement.

So today, since I am no longer on the PD meds that contraindicated it, I start on Triavil.

It might help if I explained how all this tummy trouble is related to the Movement Disorder. When I am not on medicine for it, it’s real easy to see the uncontrolled movements of various skeletal muscle groups. The twitches, jerks, shakes, tremors, and awkward gait could not possibly be ignored.

But what cannot be seen is what is happening inside me. If I try to stick out my tongue, even now that I am on medicine, you see that it is in constant motion. The same thing is true of throat muscles. Sometimes I can hear the click of the soft palate spasms, and I really didn’t realize that this was anything unusual. I have always had times when I could hear that click. Then come the muscles in the esophagus, that should rhythmically move food down to the stomach, where coordinated muscle action churns the food, passing it on to the small intestines. After the coordinated movements of peristalsis push the undigested food into the colon, the body removes the liquid and eventually we eliminate the solid waste, again using coordinated muscle movements.

Gee, did you notice my intentional use of the word coordinated??? Well, mine AIN’T!!!! It’s no wonder I have GERD, stomach cramps, bloating, gas, constipation, and even problems using rectal muscles properly.

So the Neurologist helps with the skeletal muscle problems, but it’s my Gastroenterologist who helps me with all these internal muscle problems. He has found the right combination to keep me comfortable before, and I am confident that he will this time, too.

Posted in Medicines and Supplements | Tagged bloating, Bowel Retraining, coordination, drug interaction, elimination difficulties, Essential Myoclonus, Gastroenterologist, GERD, muscle spasms, pharmacist, Primidone, stomach, tremors, Triavil | Leave a reply

Tummy Is Still Complaining

Day by Day with a Movement Disorder Posted on August 14, 2008 by DBMay 30, 2016 4

I’ve been on the Prevpac high powered combination of two antibiotics and an acid reducer twice a day now since Monday, and my tummy is cramping more now when food or medicine touches it than it was before I started the medicine! Go figure. I’m going to call Dr. B’s nurse this morning, to see if there is something else I should be doing.

I have continued with the Glycerin suppository routine, but I quit the Milk of Magnesia every 3 days, as it did not seem necessary. I also moved a few of my medicine times around so that the Primidone is not the last thing I take before bed. That dose was going into a completely empty stomach, since I have to empty my tummy before I go to sleep, thanks to GERD. What I came up with is not ideal, but probably better than the way I had it. Now I take the Bentyl last, which is supposed to help the digestive muscles work smoothly and in the normal coordinated pattern, instead of spasms. Not sure that is any easier on my tummy or not, so I have several questions for the nurse.

She has been his nurse for a long time, and we have a good relationship. I have the highest regard for my Gastro and his nurse. They have both been very considerate and patient with me over the years. I never feel like I am being rushed through a mill. I have had a few doctors like that over the years, and I fired them all. I grew up with a family doctor who made house calls, so I like to use medical people who are willing to build a relationship with me. I am very thankful for the great doctors and staff who help me with all my health issues.

I continue to spend a lot of time on our Lost Toys Search Service, and on our online Catalog sales. I’m still a long way from having even half of our inventory cataloged, so it keeps me busy and mentally alert. There’s something new to learn almost every day, and that’s good for the old brain cells.

Speaking of sharpening the brain, have you tried the new Numbrix puzzle that Savant has added to her Parade Magazine article. It’s fun! I even found a place online to work the ones from past issues. I could get addicted to this puzzle very easily, and it’s a nice change from Sudoku.

So, tummy is still a problem, elimination is doing better, and brain is being stimulated. I’m not feeling good, so my energy level is low, but I am getting quite a bit accomplished each day.

All in all, no brain fog and no jerks …. I’d say that’s a good thing.

Posted in Symptoms | Tagged bloating, Bowel Retraining, brain fog, brain training, Gastroenterologist, GERD, glycerin suppositories, muscle spasms, nausea, pain, Prevpac, stomach | 4 Replies

Had an Endoscopy Today

Day by Day with a Movement Disorder Posted on August 4, 2008 by DBMay 30, 2016  

My Gastro’s nurse called right at 5PM Friday afternoon to tell me that he wanted to do an Endoscopy on Monday, since I was still nauseated, with a yucky acid taste in my mouth, abdominal pain, and coughing fits after swallowing (NOT choking). He had expected me to be much better after going back on the full Bowel Retraining regimen this week.

Talk about hurry up!!! As luck would have it, the Outpatient Services place was closed when I called. I was able to find a place online where I could pre-register, but we had absolutely no idea what time my appointment was, since I did not get to talk to anyone.

So, we got up at 4:30AM today, headed into town, and just showed up there at 6AM when they opened. We went prepared with a whole bag of books, Sudoku puzzles, and magazines, fully expecting to have to wait no telling how long before they could work us in, but it all worked out OK! We were taken at 7AM and were out of there by 10:30!!

He did not find anything obviously wrong with the esophagus, but he did take a biopsy. And he suggested I see my ENT, as they might find something he did not.

My stomach was another matter, however. He could not tell for sure if it is irritated by my meds or if there is an infection, but the lining is definitely inflamed. He biopsied there, too, and told me to stay on the strict ulcer/GERD diet until I get the test results. And for the first time ever of the many times hubby and I have had Endoscopies, we came home with a printout of the “impressions” as to what he suspects the problem is AND photos!! I have lots of medical terms to research now, which I enjoy doing, as I always learn something of value – even if the possible diagnoses don’t turn out to be what is wrong with me.

We stopped and had a nice breakfast and I slept most of the way home, and other than a slightly sore throat, I am doing just fine. Of course I am on el blando diet right now.

I should find out some results by the end of the week, and certainly by sometime next week. It’s just a relief to have the test done and again chase away that nagging little demon sitting on my shoulder who whispers to me to raise doubts about whether I am really just a complainer and that there’s nothing really wrong with me.

Posted in Tests | Tagged Bowel Retraining, coughing, endoscopy, Gastroenterologist, GERD, nausea, pain, stomach | Leave a reply

Tummy is Still Not Right

Day by Day with a Movement Disorder Posted on August 1, 2008 by DBMay 30, 2016  

I am supposed to call my Gastro’s office today to let him know how I’m doing, and I won’t have good news for him. I cleaned myself out, at his directions, and then went back to normal eating as much as I could, which is what he told me to do.

I’m still nauseated, bloated, and sore. Plus, I am still clearing my throat all the time and coughing from a tickle feeling when I eat anything the least bit spicy. And I do mean the least bit, as neither one of us likes hot foods. It always feels like the same place in my throat is being irritated.

So I suspect he will be considering an Endoscopy this time. I thought this time was different, but the usual problems did have to be ruled out.

We will be going on our usual Date Day today. I figure I won’t feel any worse than I already do, and I do need to get out of the house. Plus, it’s always a good bit of exercise for me, and I certainly need that. It’s a whole lot more fun going up and down hilly driveways in anticipation of finding some goodies than it would be to just do an exercise routine.

Posted in Symptoms | Tagged Bowel Retraining, elimination difficulties, Friday Date Day, Gastroenterologist, GERD, nausea, pain, stomach | Leave a reply

I Should Know Better – Back on Bowel Retraining Routine

Day by Day with a Movement Disorder Posted on July 30, 2008 by DBMay 30, 2016  

CAUTION: I try to be as specific with symptoms, problems, etc., as I can, so that what I write might help someone else in a similar situation. Feel free to skip this post if you’re not up to a frank discussion of bodily functions.

There’s nothing that aggravates me more than to go to my wonderful Gastrologist again with nausea and abdominal pain, only to be told to do the same thing he has had me do before. Each time I go through one of these strange “I don’t think I’m constipated” episodes, I think that it can’t possibly be the same thing I had before.

I have to use Miralax each morning, eat a high fiber breakfast cereal, drink lots of fluids, take 4 Bentyl tablets, a chewable Acidophilus tablet, and 3 Metamucil capsules every day. I’ve been on that regimen now for a long time. Until I started on the Primidone I was not having any problems with my bowels. But as soon as I started taking the Primidone, which has done wonders for my jerking and twitching, I noticed that I was heading for trouble with my elimination.

So, I increased my fiber intake, thinking that was going to be enough. And it looked like I was correct, up until the last few weeks. Then I started having a yucky taste in my mouth most of the day. I had a tickling kind of cough if I swallowed anything the least bit spicy or scratchy, and it was not going down the wrong way. I was almost constantly clearing my throat, and by the end of the day my throat was sore.

I was still having my usual 4 or 5 bowel movements a day, just as I have had ever since I went on all this elimination routine. I have problems with the muscles needed for defecation, so I have to stay just shy of diarrhea to be comfortable. I was still having times when I almost didn’t make it to the bathroom, so everything seemed as it should be as far as elimination was concerned.

So, after a miserable weekend, I decided it was time to see my Gastro, and they are so good about working me in. We saw him yesterday, and he says that I AM constipated, despite my objections to his conclusion. I am to call him Friday after being on the full Bowel Retraining routine, which I started last night.

So now, added to the list of procedures that I was already following, I took 4 TBS Milk of Magnesia this morning, plus used 2 Glycerin suppositories. I am to continue using the suppositories daily, and the Milk of Magnesia every 3 days if I still have symptoms. He also told me to go back to eating my normal diet, instead of the baked potatoes and chicken soup that I have eaten almost exclusively since Friday.

So, you know where I have been most of this day. I’m still clearing my throat constantly, and my throat is irritated, but I am not nauseated like I was yesterday morning. I’ll be eating our usual lunch today, and hopefully it will not cause the coughing or nausea to worsen.

Will I ever learn?????

Posted in Symptoms | Tagged Bentyl, bloating, Bowel Retraining, elimination difficulties, gas, Gastroenterologist, GERD, glycerin suppositories, Metamucil, Miralax, nausea, pain, Quality of Life, stomach, swallowing, symptoms | Leave a reply

Slept All Day Yesterday

Day by Day with a Movement Disorder Posted on January 11, 2008 by DBJanuary 11, 2008  

I overdid it. We have been going more and more to fresh foods, mostly raw, for lunch. Our salads have been getting larger, while the amount of cooked vegetables has been decreasing. We’ve also had a few smoothies, including one the other day that was a total disaster. I made myself drink about 6 oz of it, because I just couldn’t stand the thought of wasting all that food. Well, if I ever make one again that tastes yucky – it will make great compost!!

I was bloated on Wednesday morning, and I didn’t feel like exercising at all. I did a little moving around, but quit about half way through the video. But I felt OK as the day went on. I should have paid attention to my body and gone back on my strict safe diet and the bowel retraining regimen I have used in the past. But I didn’t listen.

By that night, I was nauseated and so uncomfortable that I used a Phynergan suppository and went to sleep early. I woke up about midnight coughing uncontrollably from acid reflux, so I started sipping on liquid Gaviscon to calm down my esophagus.

I slept until my medicine alarm went off at 5:00AM, was so groggy that I took the Zelepar and went right back to sleep. I kept on waking up for meds and going back to sleep most of the day. I went back to using the glycerin suppositories, too. I cut back on medicines to only those I thought were essential, and only had a couple of lightly buttered English muffins to eat all day. I managed some chicken soup for supper, and then slept all night again.

Surprisingly, I felt OK this morning. But I will be extra careful with my meals for the next few days, and will be using the glycerin suppositories again for awhile. My Gastroenterologist explained to me that I feel like that when I am constipated. The fact that I am still going to the bathroom doesn’t matter, if I am not eliminating enough to keep my colon working properly.

I went for my Physical Therapy this morning, as usual, and we even did a little traveling for our Date Day. There aren’t very many Estate Sales this time of year, so we ended up going to just two. Neither one of them was very interesting, but we did find some old toys that will pay for our day out, anyway.

I feel fine as I write this, but I had become complacent, I guess, since it had been so long since my tummy has bothered me. I learned my lesson this week.

Posted in Uncategorized | Tagged bloating, Bowel Retraining, diet, elimination difficulties, Friday Date Day, Gastroenterologist, GERD, nausea, Physical Therapy, stomach | Leave a reply

Whoever Named It GoLYTELY Had a Cruel Sense of Humor!!!

Day by Day with a Movement Disorder Posted on August 23, 2007 by DBAugust 23, 2007 13

I said I was going to quit talking about my elimination problems. Well, no such luck, so skip this post, if you’re as tired of reading about it as I am of struggling with it. Anyway, I called my Gastro the other day to tell him that, even though I had gone a week on his full strength Bowel Retraining program, that I still felt blocked, and he called back yesterday. I’m in the process of drinking down 4 liters of GoLYTELY, by the hardest. I’ve had surgery and colonoscopy preps before, but I used Fleet. At this point, I’d say I’d rather drink a small amount of horrible tasting Fleet than a gallon or so of relatively bland tasting GoLytely! I think I’d be nauseated if I had to drink that many glasses of just plain water every 10 minutes, let alone this stuff.

OK, I’ve griped. I still want my doctor to do a colonoscopy, though, because I don’t think I’m going to have any peace of mind until he does. I’ve tried not to worry, but I really do have the sensation that there’s some kind of tissue blockage. So, I’ll have this to go through again sometime or another soon. Gee, what fun.

Now, I’m praying this does the trick and clears out whatever the problem has been. I’m also praying that I will have peace of mind with what my Gastroenterologist tells me, but that I continue to press for a resolution if I’m not. I have learned that I am the best judge of what my body is doing, not the doctors! And I think God expects me to continue to be my own best patient advocate.

Posted in Uncategorized | Tagged Bowel Retraining, elimination difficulties, Gastroenterologist, Parkinson's, Quality of Life | 13 Replies

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